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Personal Health Record: Managing Personal Health

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Nursing Informatics

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Abstract

This chapter presents the work of the TIGER Collaborative on Consumer Empowerment and the Personal Health Record (PHR). The entire body of work for the TIGER Collaborative Team #9 is available at http://tigerphr.pbworks.com/ The first part of this chapter will review the state of the science on the potential of health consumerism as seen through the lens of health literacy and nursing’s role as an advocate, educator, and facilitator for using health-enabling technologies. The second half of the chapter focuses on the domain of the PHR – state of the art, adoption, public policy, and nursing’s role in care delivery and enabling individuals to self-manage and to be active participants in their care decisions.

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References

  1. Saxon W. Frederich J. Schlink, writer and pioneer in consumerism (obituary). New York Times January 20. http://www.nytimes.com/1995/01/20/obituaries/frederick-j-schlink-writer-and-pioneer-in-consumerism-103.html?scp=9&sq=healthpercent20consumerismpercent20&st=cse; 1995.

  2. Franklin D. The consumer, patient power: making sure your doctor really hears you. New York Times 15 August 2006. http://query.nytimes.com/gst/fullpage.html?res=9C06E4DB173EF936A2575BC0A9609C8B63&sec=health&spon=&scp=21&sq=health20consumerpercent20empowerment&st=cse; 2006.

  3. Office of Disease Prevention and Health Promotion. Department of Health and Human Services. Healthy people 2010. Progress review on focus 11. www.healthypeople.gov/data/2010prog/focus11; 2007.

  4. Institute of Medicine. Crossing the Quality Chasm. A New Health System for the 21st Century. Washington: National Academy; 2001.

    Google Scholar 

  5. New York Times. About Google. http://topics.nytimes.com/top/news/business/companies/google_inc/index.html?inline=nyt-org; 2009.

  6. New York Times. About Yahoo. http://topics.nytimes.com/top/news/business/companies/yahoo_inc/index.html; 2009.

  7. Broder C. Consumer demand will drive healthcare change, speakers say. Healthcare IT News. http://www.healthcareitnews.com/news/consumer-demand-will-drive-healthcare-change-speakers-say; 2005. Accessed 8.09.09.

  8. Harris MC. Physicians need IT to succeed in consumer-driven Healthcare environment. Online presentation, HIMSS Virtual Conference, November. http://www.healthcareitnews.com/news/physicians-need-it-succeed-consumer-driven-healthcare-environment; 2007.

  9. National Cancer Institute. National Institutes of Health. Clinical trial results. http://www.cancer.gov/clinicaltrials/ct-types-list; 2009.

  10. Harvard Libraries Online. http://lib.harvard.edu/; 2009

  11. Yale University Library. http://sfx.library.yale.edu/sfx_local/azlist; 2009. Accessed 11.07.09.

  12. Nursing Outlook. Official Journal of the American Academy of Nursing. http://www.elsevier.com/wps/find/journaldescription.cws_home/623105/description#description; 2009.

  13. Balint M. The Doctor, His Patient and the Illness. New York: International Universities Press; 1957.

    Google Scholar 

  14. Deloitte. Many consumers want major changes in health care design, delivery. Deloitte LLP. http://www.deloitte.com/dtt/article/0,1002,cid%253D192717,00.html; 2008.

  15. Dickerson SS, Brennan PF. The Internet as a catalyst for shifting power in provider-patient relationship. Nurs Outlook. 2002;50:195-203.

    Article  PubMed  Google Scholar 

  16. Seidman J, Eytan T. Helping patients plug in: lessons in the adoption of online consumer tools. California Healthcare Foundation. www.chcf.org/documents/chronicdisease/HelpingPatientsPlugIn.pdf; 2008.

  17. Lohr S. Kaiser backs Microsoft patient-data plan. NY Times, June 10. http://www.nytimes.com/2008/06/10/business/10kaiser.html; 2008.

  18. Pew Internet & American Life Project. Online activities, 2000–2009. http://www.pewinternet.org/Static-Pages/Trend-Data/Online-Activities-20002009.aspx; 2009.

  19. Pew Internet Online. Demographics of internet users; 2008.

    Google Scholar 

  20. Ferguson T, Frydman G. The first generation of e-patients. BMJ. 2004;328:1148-1149.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Madden M. Internet penetration and impact. Pew Internet & American Life Project. http://www.pewinternet.org/Reports/2006/Internet-Penetration-and-Impact.aspx; 2006.

  22. Fox S, Livingston G. Latinos online. Pew Internet & American Life Project. http://www.pewinternet.org/?/media//Files/Reports/2007/Latinos_Online_March_14_2007.pdf.pdf; 2007.

  23. Jones S. Fox S. Generations online in 2009. Pew Internet & American Life Project. http://www.pewinternet.org/Reports/2009/Generations-Online-in-2009.aspx; 2009.

  24. Kutner M, Greenberg E, Jin Y, et al. The Health Literacy of America’s Adults: results from the 2003 National Assessment of Adult Literacy (NCES2006-483). U.S. Department of Education. Washington, DC: National Center for Education Statistics. http://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2006483; 2006.

  25. Rideout V, Neuman T, Kitchman M, et al. E-health and the Elderly: How Seniors Use the Internet for Health Information. Menlo Park: The Henry J. Kaiser Family Foundation; 2005.

    Google Scholar 

  26. Office of the Surgeon General. Proceedings of Surgeon General’s Workshop on Improving Health Literacy. National Institutes of Health, Bethesda, MD. http://www.surgeongeneral.gov/topics/healthliteracy/pdf/proceedings120607.pdf; 2006.

  27. Office of Disease Prevention and Health Promotion. Department of Health and Human Services. Healthy people 2010, Chapter 11, Health Communication 2000. http://www.healthypeople.gov/document/html/volume1/11healthcom.htm; 2000.

  28. Baur C. Health literacy as a factor in the adoption and use of Personal Health Records. Deparment of Health and Human Services. Presentation for US Surgeon General’s Office. http://tigerphr.pbworks.com/Work+Group+3 or contact at Cynthia.Baur@hhs.gov; 2006. Accessed 2.08.09.

  29. Berkman ND, DeWalt DA, Pignone MP, et al. Literacy and health outcomes. Evidence report/technology assessment #87. AHRQ Publication No 04-E007-1. www.ahrq.gov/clinic/epcsums/litsum.pdf; 2004. Accessed 3.07.09.

  30. Lynn NB, Panzer AM, Kindig DA, eds. Committee on Health Literacy, Institute of Medicine. Health Literacy: A Prescription to End Confusion. Washington: National Academies; 2004.

    Google Scholar 

  31. Henderson V. The Nature of Nursing: A Definition and Its Implications for Practice, Research, and Education. New York: Macmillan; 1966.

    Google Scholar 

  32. Office of Disease Prevention and Health Promotion. Department of Health and Human Services. Quick guide to health literacy. www.health.gov/communication/literacy/quickguide/; 2006a.

  33. Zorn M, Allen MP, Horowitz AC. National Library of Medicine, NIH. Understanding health literacy and its barriers. Current bibliographies in medicine 2004–1 (2000) and (2004). http://www.nlm.nih.gov/pubs/cbm/healthliteracybarriers.html; 2004. Accessed 11.07.09.

  34. Agency for Health Research and Quality. Barriers and drivers of health information technology use for the elderly, chronically ill, and underserved, Rockville, MD. http://www.ahrq.gov/clinic/tp/hitbartp.htm; 2008. Accessed 8.07.09.

  35. Whitehurst GJ. Director, Institute of Education Sciences, U.S. Department of Education. Presentation at the Surgeon General’s Workshop on Improving Health Literacy, Bethesda, MD. http://www.surgeongeneral.gov/topics/healthliteracy/panel1.htm; 7 Sep 2009. Accessed 11.07.09.

  36. Baker DW, Gazmararian JA, Williams MV, et al. Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. Am J Public Health. 2002;92(8):1278-1283.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Baker DW, Parker RM, Williams MV, Clark WS. The relationship of patient reading ability to self-reported health and use of health services. Am J Public Health. 1997;87(6):1027-1030.

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  38. Baker DW, Parker RM, Williams MV, Clark WS. Health literacy and the risk of hospital admission. J Gen Intern Med. 1998;13(12):791-798. Comment in: J Gen Intern Med. 1998;13(12):850-851.

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  39. Friedland R. New estimates of the high costs of inadequate health literacy. In: Proceedings of Pfizer Conference Promoting Health Literacy: A Call to Action. Washington: Pfizer; 7–8 Oct 1998:6-10.

    Google Scholar 

  40. Scott TL, Gazmararian JA, Williams MV, et al. Health literacy and preventive health care use among Medicare enrollees in a managed care organization. Med Care. 2002;40(5):395-404.

    Article  PubMed  Google Scholar 

  41. Williams M, Parker R, Baker D, et al. Inadequate functional health literacy among patients at two public hospitals. JAMA. 1995;274(21):1677-1682.

    Article  PubMed  CAS  Google Scholar 

  42. Office of Disease Prevention and Health Promotion. Department of Health and Human Services. Expanding the reach and impact of consumer e-Health tools. www.health.gov/communication/ehealth/ehealthTools/default.htm; 2006.

  43. Office of Disease Prevention and Health Promotion. Department of Health and Human Services. America’s health literacy: why we need accessible health information. www.health.gov/communication/literacy/issuebrief; 2008.

  44. Joint Commission. Understanding your doctors and other caregivers, Chicago. http://www.jointcommission.org/PatientSafety/SpeakUp/sp_understanding.htm; 2008.

  45. Office of Civil Rights. Health information privacy. http://www.hhs.gov/ocr/hipaa/; 2008.

  46. American Nurses Association. Nursing: Scope and Standards of Practice. Washington: American Nurses Publishing; 2004.

    Google Scholar 

  47. Institute of Medicine. Retooling for An Aging America. Building the Healthcare Workforce. Washington: National Academies; 2008.

    Google Scholar 

  48. Markle Foundation. Americans support online personal health records: patient privacy and control over their own information are crucial to acceptance. http://www.markle.org/resources/press_center/press_releases/2005/press_release_10112005.php; 2005.

  49. Markle Foundation. Connecting for health. The Personal Health Working Group final report. http://www.connectingforhealth.org/resources/final_phwg_report1.pdf; 2003. Accessed 8.09.09.

  50. AHIMA e-HIM Personal Health Record Work Group. Defining the personal health record. J AHIMA 2005;76(6): 24-25. http://library.ahima.org/xpedio/groups/public/documents/ahima/bok1_027351.hcsp?dDocName=bok1_027351. Accessed 16.07.08.

  51. National Alliance for Health Information Technology. Defining key health information technology terms. Report to Office of the National Coordinator for Health Information Technology. http://www.nahit.org/images/pdfs/HITTermsFinalReport_051508.pdf; 2008.

  52. Commission on Systemic Interoperability. Ending the Document Game. U.S. National Library of Medicine, National Institutes of Health, Department of Health and Human Services. http://endingthedocumentgame.gov/; 2005.

  53. Government Health IT. Medicare test of PHRs gets under way in two states. http://www.govhealthit.com/newsitem.aspx?tid=72&nid=69548; 2009.

  54. National Library of Medicine. Charting a course for the 21st century – NLM’s long range plan 2006–2016. National Library of Medicine. http://www.nlm.nih.gov/pubs/plan/lrp06/NLM_LRP2006_WEB.pdf; 2006.

  55. Department of Health and Human Services. ONC-coordinated federal health it strategic plan: 2008–2012. http://healthit.hhs.gov/portal/server.pt/gateway/PTARGS_0_10741_848083_0_0_18/HITStrategicPlan508.pdf; 2008.

  56. Cronin C. Personal health records: an overview of what is available to the public. AARP Public Policy Institute. http://www.aarp.org/research/health/carequality/2006_11_phr.html; 2006.

  57. National Health Council. Putting patients First® – progress toward action pilot projects. Council currents. http://www.nationalhealthcouncil.org; 2006.

  58. Project Health Design. Expert teams to design new solutions for personal health records to help consumers manage their health. http://www.projecthealthdesign.org/news/5535; 2006. Accessed 16.07.09.

  59. Project Health Design. Grantee projects. http://www.projecthealthdesign.org/projects; 2007.

  60. Project Health Design. Round one final report. http://www.projecthealthdesign.org/media/file/Round%20Onepercent20PHD%20Final%20Report6.17.09.pdf; 2009.

  61. America’s Health Insurance Plans. Industry leaders announce personal health record model; collaborate with consumers to speed adoption. http://www.ahip.org/content/pressrelease.aspx?docid=18328&pf=true; 2006. Accessed 16.07.09.

  62. America’s Health Insurance Plans. Standards for electronic data interchange: personal health record data transfer between health plans (275). Version 3.1.4. http://www.ahip.org/content/default.aspx?bc=39|341|18427|20076; 2007. Accessed 16.07.09.

  63. Continua Health Alliance. Continua Health Alliance takes next step in offering connectivity to better manage health and wellness. http://www.continuaalliance.org/news_events/press_room/FINAL_Continua_Press_Release_09_11_07.pdf; 2007.

  64. Continua Health Alliance. Continua Health Alliance advances mission to create connected personal health ecosystem. http://www.continuaalliance.org/static/binary/cms_workspace/Continua_Update_release_v_FINAL_2_.pdf; 2008.

  65. Bishop L. Are personal health records breaking out? Forrester Research. http://www.forrester.com/Research/Document/Excerpt/0,7211,39415,00.html; 2006. Accessed 8.09.09.

  66. Project Health Design. Personal health records – current landscape and future visions. http://www.projecthealthdesign.org/about/overview; 2007. Accessed 16.07.09.

  67. Project Health Design. Project health design: rethinking the power and potential of personal health records. http://www.projecthealthdesign.org/; 2007.

  68. Harris Interactive. U.S. adults not very confident that physicians have the complete picture, according to a New WSJ.com/Harris interactive survey. http://www.harrisinteractive.com/news/printerfriend/index.asp?NewsID=1264; 2007. Accessed 8.09.09.

  69. Ghandi TK, Weingart SN, Borus J, et al. Adverse drug events in ambulatory care. N Engl J Med. 2003;348:1556-1564.

    Article  Google Scholar 

  70. Tang P, Ash J, Bates DW, et al. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. JAMIA. 2006;13(2):121-126.

    PubMed  CAS  PubMed Central  Google Scholar 

  71. Cain C, Clancy C. Commentary: patient-centered health information technology. Am J Med Qual. 2005;20(3):164-165.

    Article  PubMed  Google Scholar 

  72. Wolter J, Friedman B. Health records for the people: touting the benefits of the consumer-based personal health record. J Am Health Info Manage Assoc. 2005;76(10):28-32.

    Google Scholar 

  73. Harris Poll®. Number of “cyberchondriacs” – adults going online for health information – has plateaued or declined. Rochester: Harris Interactive. http://www.harrisinteractive.com/harris_poll/index.asp?PID=686; 2008.

  74. Wall Street Journal Online/Harris Interactive Health-Care Poll. Few patients have access to online services for communicating with their doctors, but most would like to. http://www.harrisinteractive.com/news/newsletters/wsjhealthnews/WSJOnline_HI_Health-CarePoll2006vol5_iss16.pdf; 2006.

  75. Jossi F. Personal health records. Healthcare informatics. http://www.healthcare-informatics.com; 2006.

  76. Kaelber DC, Jha AK, Johnston D, et al. A research agenda for personal health records (PHRs). JAMIA. 2008;15(6):729-736.

    PubMed  PubMed Central  Google Scholar 

  77. Kaelber DC, Shah S, Vincent A, et al. The value of personal health records. Center for Information Technology Leadership (CITL), Partners HealthCare System. Chicago: HIMSS http://www.citl.org/_pdf/CITL_PHR_Report.pdf; 2008.

  78. Connecting for Health. Technology companies, providers, health insurers and consumer groups agree on framework for increasing privacy and consumer control over PHRs. http://www.connectingforhealth.org/news/pressrelease_062508.html; 2008.

  79. Carrell D, Ralston JD. Variation in adoption rates of a patient web portal with a shared medical record by age, gender, and morbidity level. AMIA Symp Proc 2006:871.

    Google Scholar 

  80. Connecting for Health. Common framework for networked personal health information: overview and principles. http://www.connectingforhealth.org/phti/reports/overview.html; 2008.

  81. Office of the National Coordinator for Health Information Technology. Nationwide privacy and security framework for electronic exchange of individually identifiable health information. Department of Health and Human Services. http://healthit.hhs.gov/portal/server.pt/gateway/PTARGS_0_10731_848088_0_0_18/NationwidePS_Framework-5.pdf; 2008.

  82. Certification Commission for Healthcare Information Technology. Consumer’s guide to certification of personal health records. http://www.cchit.org/sites/all/files/20080604IntroPHRAdvisoryTaskForce.pdf; 2008.

  83. National Health Council. Prototype EPHR challenges revealed, next steps planned. Council currents. http://www.nationalhealthcouncil.org/forms/newsletters/dec-07.pdf; 2007.

  84. Yasnoff WA. Electronic records are key to health-care reform. Business Week, December 19. http://www.businessweek.com/print/bwdaily/dnflash/content/dec2008/db20081218_385824.htm; 2008. Accessed 16.07.09.

  85. Robinson B. Banking on health IT. Government health IT; 30 July 2008.

    Google Scholar 

  86. Pierson M. Pursuing perfection (P2) in chronic and complex conditions. Presentation to the Governor’s Long Term Care Task Force. http://www.governor.wa.gov/LTCTF/ac_ccm/060614/Marc_Pierson_CCM.pdf; 14 June 2006.

  87. Wagner EH, Austin BT, Davis C, et al. Improving chronic illness care: translating evidence into action. Health Aff (Millwood). 2001;20:64-78.

    Article  CAS  Google Scholar 

  88. Bernoff J. TechPotential: predicting technology success. Forrester Big Idea. http://www.forrester.com/Research/Document/Excerpt/0,7211,37510,00.html; 2006. Accessed 8.09.09.

  89. Office of the National Coordinator for Health Information Technology. The ONC-Coordinated Federal Health IT strategic plan: 2008–2012. Department of Health and Human Services. http://healthit.hhs.gov/portal/server.pt?open=512&objID=1211&parentname=CommunityPage&parentid=5&mode=2&in_hi_userid=10732&cached=true; 2008. Accessed 16.07.09.

  90. American Nurses Association. Scope and Standards of Nursing Informatics Practice. Washington: American Nurses Publishing; 2008.

    Google Scholar 

  91. McDaniel AM, Schutte DL, Keller LO. Consumer health informatics: from genomics to population health. Nur Outlook. 2008;56:216-223.

    Article  Google Scholar 

  92. AHIMA Personal Health Record Practice Council. Defining the personal health information management role. J AHIMA. 2008;79(6):59-63.

    Google Scholar 

  93. Brewer B. Obama pledges to pursue health it, despite economic woes. http://www.nextgov.com/nextgov/ng_20081212_8804.php; 2008. Accessed 8.09.09.

  94. Connecting for Health. A common framework for networked personal health information. www.connectingforhealth.org/commonframework/docs/P9_NetworkedPHRs.pdf; 2006.

  95. Health Affairs. Founded by project HOPE in 1981. http://www.healthaffairs.org/1500_about_journal.php; 1981.

  96. Health Level Seven. PHR-system functional model, release 1, DSTU. Health Level 7; 2007.

    Google Scholar 

  97. Health Level Seven. Health Level Seven publishes personal health record system functional model (PHR-S FM as a draft standard for trial use. http://www.hl7.org/documentcenter/public/pressreleases/HL7_PRESS_20081215.pdf; 2008.

  98. Fox S, Jones S. The social life of health information. Pew Internet & American Life Project. http://www.pewinternet.org/?/media//Files/Reports/2009/PIP_Health_2009.pdf; 2009.

  99. U.S. Department of Veterans Affairs. VA improves “My Health eVet” Web Site. http://www.washingtondc.va.gov/news/healthyvet.asp; 2003.

  100. U.S. Department of Veterans Affairs. What’s new on my health eVet. https://www.myhealth.va.gov/mhv-portal-web/anonymous.portal?_nfpb=true&_pageLabel=whatsNew&_nfls=false; 2009.

  101. Wall Street Journal Online/Harris Interactive Health-Care Poll. New poll shows U.S. adults strongly favor and value new medical technologies in their doctor’s office. http://www.harrisinteractive.com/news/newsletters/wsjhealthnews/WSJOnline_HI_Health-CarePoll2005vol4_iss20.pdf; 2005. Accessed 16.07.09.

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Weaver, C., Zielstorff, R. (2010). Personal Health Record: Managing Personal Health. In: Ball, M., et al. Nursing Informatics. Health Informatics. Springer, London. https://doi.org/10.1007/978-1-84996-278-0_16

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